Hello family and friends. My niece, Lydia, was recently diagnosed with a connective tissue disorder. This disorder is in the family of Ehlers Danlos syndrome. However, the gene for Lydia’s type has yet to be identified. For now, she is classified as non-specified Ehlers Danlos and Hypermobility Syndrome. This connective tissue disorder effects every single system in Lydia’s body. She has suffered chronic infections, muscle organ malfunction/shut down, extreme fatigue, chronic nerve pain, increased heart rate, muscle weakness/hypotonia (low muscle tone), dislocations, increased anxiety, increased cyclic vomiting episodes, and more. She has not been able to attend a full week of school since September of 2017 due to these health issues. Due to lack of knowledge and experience in treating connective tissue disorders in Maine, my sister Holli, has been taking Lydia to Boston Children’s Hospital for frequent appointments with her specialists. Currently, Lydia sees eight different specialists to help manage this disorder. Thankfully, all of her appointments have been exclusively on an outpatient basis. At Lydia’s most recent pain clinic appointment, they have recommended that Lydia be admitted to the Pediatric Pain Rehab Center at Boston Children’s Hospital. This program is an intense program that will aid Lydia in rebuilding strength, gain much needed endurance, learn coping skills for pain, understand her body’s abilities and limits, and deal with the emotional toll this illness has taken on her. She will also have testing to help her specialists understand the extent of the hypotonia throughout her organs and how it affects their function. The rehab program will offer Lydia so much and they are confident she could return to school full time upon completion of the program! After much (and I do mean much) deliberation, consulting with her physical therapist, her counselor, her pediatrician, and family, Holli has decided this program would be in Lydia’s best interest.
For Lydia to receive this treatment, she and Holli will need to relocate to Boston temporarily. The approximate admission date is December 10th. As much as Holli hates asking for your help, that is what’s needed at this time. While in Boston, Holli will be temporarily out of work. Income will be very limited, and that limited income will cover the expenses and bills at home only. Holli will not be able to cover all the expenses (housing, food, gas, parking, and other day-to-day necessities) on her own while in Boston. This is where I am asking my family and friends to help us get Lydia to Boston. Any contribution you can make to Lydia’s Boston fund, we would be very appreciative and so very thankful! If you are not in the position to donate, we ask that you please spread the word and share this fundraiser with your family and friends. We also ask for your prayers and support during this challenging, yet hopeful time. Thank you everyone.